Day 85: Kidney diagnosis and surgery

Dear family and friends,

Today has been a long, difficult, stressful day, but we finally have a diagnosis and prognosis for Loki.

The short summary: Loki's only kidney appears to be producing urine, but not sending it out. This will require surgery tomorrow in order to achieve a temporary solution, an extended stay at a different hospital, and more surgery later.

The full story: In the late afternoon, Loki was transported to Children's Hospital Oakland, which is just perhaps a mile or so away. They have a level of specialist expertise that Alta Bates does not. He got a kidney ultrasound, a nephrologist (kidney doctor) was called in, and a urologist (a doctor of the urinary tract) was consulted by phone. It seems that his one kidney is producing urine, but that the ureter - the output tube from the kidney - seems blocked.

If this is true, the long-term solution is surgery in which that tube is repaired. This can be done a few different ways, the most common of which is grafting from other tissue. Sometimes a stent - a little tube to help hold up and open up the ureter - is used.

The problem is that his body is presently too small for this. The temporary solution is a nephrostomy, a surgery that he will receive tomorrow. Essentially, a drainage tube will be inserted into his kidney. For the next few weeks, his urine will just drain out this tube from his back, into a bag. Loki will need to be put back on the old ventilator, with its nasty breathing tube, for the duration of the procedure - although this will be a smaller, softer flexible tube. He will be put under general (full-body) anesthetic. But the surgery does not require a big opening in his gut. Instead, it is performed by monitoring his body through interventional radiology, using real-time imaging, sort of like a continuous X-ray or ultrasound, during surgery

If his ureter is, in fact, blocked, then this procedure will almost certainly take care of the problem, and is not likely to cause other negative side effects.

Before the surgery, the medical staff needs to get a two catheters (deep IVs) into his blood system: a PICC, which he had weeks ago but became infected, in order to delivery nutrients and medicine near his heart; and an arterial catheter, from which blood can be regularly drawn. Getting these in is not easy, particularly given Loki's chubby arms and legs, which have recently swollen even fatter with his fluid retention. When we left, he was being poked and prodded. The PICC actually entered through his head, which required part of his cute hair to be shaved off. It was very hard to leave our little man in the midst of this, but we need some sleep before tomorrow.

Furthermore, we are not in the clear yet. Until the surgery, there is significant concern about his low sodium and (especially) high potassium. Now that the PICC line is in, his nutrients (mainly the sugar glucose) can be delivered more centrally, and thus in higher concentrations. This will help his nutrients normalize.

Unfortunately, it is extremely unlikely that we will be able to bring Loki home with his nephrostomic tube, and it is quite unlikely that he will return to Alta Bates. We are sad about this. We had grown attached to the old NICU and particularly its great staff and (relatively) cozy feel. While we may warm up to Children's Hospital staff, the facilities are much more sterile and unwelcoming. And even though it is not far from our home, a five minute drive or a ten minute bike ride is very different than a three minute walk.

Tomorrow will be a tough day. I'll keep you updated the best I can, but I am unsure if Children's Hospital has wireless access. But Loki is our little fighter, and I remain optimistic that he will persevere.